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Issue 317 – Help coping with cystic fibrosis

A local lad who was born with cystic fibrosis has been helped with grants by a national charity.

Jonathan Phibben of Frome was helped by the Fashion and Textile Industry Children’s Trust who funded Jonathan to be home schooled.
A representative from the Textile Industry Children’s Trust said, “Jonathan was born with cystic fibrosis and spent the first 11 months of his life in hospital. Throughout his early childhood, Jonathan continued to spend prolonged periods of time in hospital, as well as receiving continual specialist care at home from his adoptive mother, Dawn.
“The fact that Jonathan had spent most of his first year in hospital also affected his early development and has resulted in him having a mild form of Asperger’s syndrome.
“Initially, Jonathan settled in well at school, however, his cystic fibrosis meant he was particularly susceptible to infections and was regularly off school or in hospital. At the age of six, Jonathan contracted a particularly serious infection (allergic aspergillus) and was hospitalised for six months.
“By the time he was well enough to return to school, Jonathan had fallen behind on his schoolwork and his friends had moved on to new friendship groups. His school was no longer providing the education or social opportunities he needed, and so Dawn decided to leave her job as a social worker and began home schooling him.
“Jonathan continued to need medical attention on a regular basis and Dawn was taught how to administer IV injections herself to reduce the amount of time he was spending in hospital. Over the next three years Dawn played the role of mother, doctor and teacher for her adoptive son.
“Around this time Jonathan also contracted another serious infection. Jonathan’s veins had been damaged due to the amount of injections and drips he had already had, and so the doctors had to fit a permanent port for administering intra-venous medication.
“While charities including the Fashion & Textile Industry Children’s Trust were still happy to fund Jonathan’s schooling, there were no independent secondary schools in the area that were prepared to enrol him due to his complex medical needs.
“With no local independent schools able to take him on and the knowledge of the effect that home schooling had on them previously, there was no obvious alternative.
“Eventually, Dawn approached the FTCT and other charities who agreed to co-fund tutors so that Jonathan could be taught at home.
“Five years on, Jonathan is doing well and is working hard towards his GCSEs. He also has an active social life and plays football and other sports regularly. As well as paying for tuition, funding from the FTCT has helped to pay for IGCSE course packs.”
Dawn said:,“The funding from the Fashion & Textile Children’s Trust has saved Jonathan’s life, and in more ways than one. Having tutors coming in to teach Jonathan has also meant I can devote myself to being his mum and carer, which is very important for our relationship. It is difficult to put in words just how much the funding has helped us.”